MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Saturday, 24 January 2009

So here we are on the eve of my our last Sunday in Stanford in the Vale. In a week's time we will sitting or sleeping in our new home in Grove. I have to say we've had quite a party today. Up until midday it was work as usual. Then it was the great painting party. Not quite paintballing. Actually a whole lot of our friends descended on our house in Grove, armed with brushes, rollers, dust-sheets and old clothes. It was like an interior version of Groundforce. By 5 o'clock they'd transformed the tired decor into a pristine new look, as well as enjoying Jane's legendary soups and tiffin. Fantastic! My part was mainly to entertain the troops with demonstrations of the lift in operation and to sit amidst the dustsheets giving general encouragement. The difference from Groundforce or similar programmes is that our friends were not paid. They were just being church, i.e. caring for each other. Thank you, friends.

I have to say it's not just church people who are kind. Just this morning a neighbour came round with a present of two inscribed wine glasses. He's an atheist, but as he said in the accompanying card, 'We may see the world differently, but I think we see people the same!... My heartfelt best wishes.' We'll often drink his health in them, I'm sure.

And tomorrow are my last services. I've chickened out of preaching, but hopefully will hold it together enough to lead the services. Not that I mind emotion in church. In fact I can't think of places more appropriate for it. There's a prayer at the beginning of the service which says, 'Almighty God, to whom all hearts are open, all desires known....' So pretence is fairly fatuous in his presence, and stiff-upper lips a touch hypocritical. It's just that losing the plot when you're steering the show is a bit embarrassing. But perhaps we shouldn't be trying to steer services; perhaps we should allow a bit more room for the Spirit. Anyway, pray for us, or wish me luck, depending on your viewpoint.

Tuesday, 20 January 2009

It WAS a wild Saturday - here, anyway. What a party we had! Quite the best I've been to. I can say that, because I didn't organise it. It was such fun. Food, of course, and drink, friends, entertainment, the Four Revs from X Factor and Strictly Come Dancing (Eat your heart out, Sergeant) and dancing.

My friend, Louise, had told me about a disabled buggies' conga at Greenbelt this year; so I fulfilled a long-cherished ambition to dance with Jane again. I only ran over one or two people before they gave me a wide berth.

I have to admit not everyone found it as exciting as I did, but then Caleb had done a great job as my spokesman, as I couldn't trust myself to speak coherently.And it went on not only that evening, but also continued on Sunday, so that we had dancing/marching round church in the morning ('We are marching in the light of God'), and then non-stop lunch and tea in the afternoon. It's not quite the end of our time here in Stanford, but it is how I shall hope to remember it, full of laughter, shared memories and enjoyment. As I said (or at least Caleb did for me), this is the place that I have experienced God's amazing love for me above all - to such an extent that it has transformed what I'm going through with MND to a positive experience - of being loved. And I'm so grateful.

Friday, 16 January 2009

Heard this morning on Radio 4: 'Saturday night will be particularly wild.' Sounds promising, I thought. All right. So it was only the weather forecast, but it sounded to me like one of those wartime coded messages for the resistance. Saturday night will be party-cularly wild.... Get it?

Wednesday, 14 January 2009

These past two mornings Jane has been full of concern for our hens. The ground has thawed out - which is good news for me, as it means it’s getting warmer, and in a way is for the chickens as when it’s freezing they stand on one leg to keep the other one warmer. The trouble is the ground is so claggy (does that word exist? If not, it does now, meaning with covered with clinging mud, especially after a thaw.) that the hens’ claws get covered with the clag, and they waddle around with ridiculous but perfectly fitting dark brown clogs. They look, I must admit, enormously heavy, but the hens don’t seem mind their web feet. Better than freezing, I imagine.

Last night, we happened too tune in to ‘Trinny and Susannah meet their match’. Their match this time were the Englsh country ladies, the two fashionistas’ ‘toughest challenge’, floral dresses and WI. Their subjects included the Rev Rosie Harper, a blond-haired but no means dumb vicar in Oxford Diocese married to another vicar. I have a feeling that her husband trained with me, getting us all singing in tune. What I fell to thinking is, how come so many vicars’ wives are so pretty (including mine)? In my experience, they often are. Is it that vicars are so worldly that they look at outer rather than inner beauty? Or is it that they marry women who are so saintly that their inner beauty transforms their outer appearance? Or is the experience of being married to a vicar so awful that God simply makes you beautiful by way of compensation? I know it’s a bit unPC to talk about vicars’ wives, especially in this area where half the clergy are women. I suppose I should talk about vicars’ spouses. The trouble is I’m ill-equipped to judge vicars’ husbands, as I can’t see what women see in some men. Anyway, Trinny and Susannah did a good job on the women, I must say, appearancewise, along with the make-up people and hairstylists - though I have a feeling they remained the same nice people that they always were. After all, a pair of mud clogs on a chicken doesn’t change its nature.

Tuesday, 6 January 2009

I live in the Vale of the White Horse. We're proud of the odd abstract piece of ancient art carved in the hill above Uffington (home of Thomas Hughes and John Betjeman). But as I look out of my study window today, it's not that I see, but a double bend sign facing at right angles to the road into our garden. No use to man nor beast. It's been like that for months. And today, as they do every week, the dustmen have been and I can see the dustbin lying on its side, bang in the middle of the drive, and probably the greenbox lid is there as well. Every week it's the same, the dustbin, its lid, the green box or its lid, strategically thrown across our entrance, so that cars, postmen, or delivery vans either run them over or have to stop. And if you've been really alert you'll have realised that our entrance is on a blind bend. I don't know if it's some dustmen's code to hurl the bin rather than replace it and its lid at the side where they found it. It can't really take more time and effort. There was a time when I would go out and take them in, but it just ain't possible now. Perhaps dustmen could do with being given disability awareness training - or just common consideration. But thanks anyway for emptying our bins.

Yesterday evening we had a book club evening when we talked about 'The Shack'. I gather it's a publishing phenomenon. No publisher would accept it, so the author, William P Young, published it himself. It became known via the internet. And he had to print more, and more. A few more than 'My Donkeybody'! Well, a lot more actually, a couple of million.... Now two of my wise brothers had read it. Neither of them was impressed - in fact one of them had given up halfway through. But it had been a family occasion; so we hadn't argued.

When I read it, I cried - not where you might think - and had mixed feelings about the rest, mainly positive, I must say. But our book club was unanimous in liking it. They loved the 'out-of-the-box' way of picturing God and the new ways of understanding old truths. But I think there's a danger of forgetting it's a novel. I don't think I'd give it to someone as a remedy for grief.

However, I know I'm getting tired and grumpy with the prospect of moving this month, and all the mixed feelings that go with retirement. And of course the cold weather makes all my muscles tense - inside and out. So you can expect a bit less jollity. And come to think of it, the world isn't that jolly at the moment: Israel and Hamas trying to destroy each other, Russia and Ukraine managing to freeze half of Europe, firms going bust one by one and the world economy sinking further into recession. You'll need a pretty big shack to sort it all out. (Let the reader understand.)

On Saturday we had the annual Wenhamfest, calculated to increase my inferiority complex. You see the thing is I have three very clever brothers. They're all doctors, 2 PhDs and I MD. And I've just got a Desmond. So a couple of days before Epiphany the three wise men, along with their retinues, came to the home of the ass. Appropriate in a way. No baby Jesus. But Immanuel. And we had a good time together - different casseroles, puddings, drinks. Time passed quickly, which is a sign of enjoying yourself.

Thursday, 1 January 2009

Normally, in recent years, Jane and I have attempted to dream in the new year - i.e. we've gone to bed and tried to get to sleep before all the commotion begins. Boring, I know, but we're older, and wiser, and tireder (OK and more boring) than we were. Well, I say wiser; but perhaps not - since we never succeed. Not surprisingly, as we're in the middle of the village, and at ten to midnight the bells in the church next door begin to ring 'muffled', which sets the dog off barking downstairs; then there's quiet while they unmuffle the bells and the dog gradually subsides. Then midnight strikes, the bells start again, unmuffled, and fireworks from parties all over the village go off, including near neighbours' who seem to specialise in mortar bombs which explode in the sky. The dog is really unhinged by what clearly is to her a cacophony of noise and barks hysterically and inconsolably long after the celebrations finish - until a couple of hours later inebriated revellers wend their merry way home through the churchyard and past our house. However, LAST night was different.

We had a candlelit supper å deux, and then sat by the fire. I read some of 'The Shack' - interesting book, by the way, quite raw in places. Then we ventured over to church, at 9.30. Our pals, Mandy and Charles, reckoned 2009 is going to be a significant year for the UK and for the church here and had suggested seeing in the New Year with a special service. I was wrapped up in a blanket for the first time in my life, with hat etc - though it wasn't as cold as it had been here. Down the ramp, into a church lit with tea lights and candles. Christmas tree, and star shining over the crib. Atmospheric. Then we had two and a half hours of worship, including mulled wine, smoked salmon and communion - and of course music. All that was missing was dancing. People kept coming in and out. We were a jolly party by the end. The bellringers arrived and rang in 2009, and we went outside launching a colossal rocket and waving sparklers. Maybe it's not your idea either of worship or of a party, but the company was brilliant and I have a feeling God liked it.

So in a blaze of light, we set off for home in 2009. The odd thing was that we weren't at all tired - which I reckon's a minor miracle seeing I had been sure I wouldn't stay the course. In fact I finished 'The Shack' before going to sleep.

Oh yes, and how did the dog enjoy it, you ask? Unsurprisingly, she was pleased to see us home; surprisingly when the mortar fireworks went off soon after, she wasn't bad. When they stopped, she stopped and went to sleep. Thanks for asking.